Taking the plunge for EB
New Years polar jump raises money for rare skin condition Meghan diGiovanna
staff writer
Meredith Gottliebson staff writer
L
eaping into a bitterly cold pool ridden with ice chunks may not sound like an ideal way to ring in the New Year but an astonishing 100 plus people gather every January first to do just that. “[The jump] was a great way to start off the New Year and an opportunity to spend time with friends and raise money for a great cause,” senior Adam Lucken said. Shane DiGiovanna, Seven Hills student and Sycamore resident was born with a rare genetic skin condition called Epidermolysis Bullosa or EB for short. The disease allows his skin to tear and blister easily resulting in extreme pain and most of his body being covered in bandages. This condition is represtented by a butterfly, whose wings are very delicate. So why are people jumping? The “Polar Bear Plunge” fundraises for EB Research Partnership a charity that helps support research on EB which currently has no cure.The jump into the icy water attempts to mimic the pain of living with EB. Every year Sycamore
students, teams, and coaches participate on each frosty New Years day. In the past hundreds have gotten involved. “It’s really cool that my [basketball] teammates could jump as a team. It was very cold though,” freshman Emily Reddy said. The jump is known for its fun traditions. Over the years rituals such as costume contests, a bagpipe performance, awards, and lots of food have become staples. “My friends and I won the Best Costume Award. We dressed up like the three amigos and we wore sombreros, but they came off when we actually jumped,” freshman Lily Martinson said. The tradition has gone global. In the past jumpers have plunged into Hong Kong’s coast, Vermont and Connecticut’s piers, Paris’s fountains, New York, Switzerland,
San Diego, Hawaii, Florida, Philadelphia, Boston, Belgium, the Cayman Islands. The media has been drawn to the plunge as well. Previously it has been covered by newspapers and news channels in both Ohio and Connecticut. It is common to see news reporters and camera crews poolside each year. Over the years the Polar Bear Plunge has raised over $25,000 for EB research and hopes to continue the tradition until an effective treatment is reached. Until then, jumpers will keep conquering the cold. “Its pretty awesome to think that these people are taking time out of their New Years day to go jump into a freezing pool just to raise money for me and my condition. That feels pretty awesome and everyone there is really nice and amazing,” DiGiovanna said. Photo courtesy of Cindy Marsland
EB by the numbers
30,000
People in the United States with EB
200
Children born with EB each year
4
Genes that can mutate to cause EB.
0
18
Q&A with Shane DiGiovanna
10,000
Dollars per month for specialized bandages required :Tell us about your by EB patients condition. (usually not covered Known cures by insurance) : Its called Epidermalosis Percent likelihood Bulosa or EB for short. Major types of Basically what that a child will be born EB: Simplex, means is I was born with EB if neither Dystrophic, with a rare fragile skin parent exhibits Junctional, condition where my symptoms and Kindler skin can tear and blister but carry very easily.
the gene.
Q A
25
Q: How do you treat
EB?
How you can help Visit: EB Research Partnership (ebresearch.org)
The Dystrophic Epidermolysis Bulosa Research Association of America (debra.org) EB Center (cincinnatichildrens.org) Epidermolysis Bulosa Medical Research Foundation (ebkids.org) Photo courtesy of Meghan DiGiovanna and wikepedia.org, research courtesy of DEBRA, EBMRF, and patient.co.uk
A
: Everyday I have to go through a painful four hour bandage process.
Q: Tell us about your
cochlear implants.
A: I was also born
completely deaf to remedy that I have cochlear implants let me hear.